Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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Oldsneeze why do some people have it so hard I really hope DD is ok and doesn't have too many more problems.
Went to a party this afternoon re-met a lady who has a beautiful little DD with rare chromosome disorder oxygen dependant and poorly. Stupidly asked were there any siblings No my DH was killed 2 months before DD was born SO I am going to count my blessings all 5 of them

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. That poor woman. Heavens we are lucky in comparison.

I'm pretty sure all will be well. It's just worry DD doesn't need. Gone are the days when all was carefree. Just want to get to the end and have a healthy little boy. He'll need to be healthy cos he's going to thump anyone who teases DGS . dGS isn't severely affected with his CP so it's a big blessing.

She's having monthly scans so CMV anomalies will most likely show on those. Fingers and toes crossed xxx

I hope dd is well and baba too.
Its horrible when something like that happens.
I agree that we're all neurotic lol.
I was told to have the mmr jab after having ds as I didn't have it when I was younger due to health problems and I forgot until this pregnancy.
A few relatives kids are ill with measles so trying to stay away from them.

Things been hectic here we've bought a new tv and sky are coming during the week to install everything.

Hormones have me feeling pretty sh1t at times.

On a plus note ive managed to get ds to drink from a bottle. Which is massive for him.
I keep his sterile water in his old milk bottle one of them mam ones. He saw it one morning and was interested so I took the lid of and he let me put it in his mouth.
So he kept it with him and drank out of it in the morning.

Then I put some pepsi in as he likes it and I wanted to build his confidence and he loved it. However hes not touched it today. Ive stuck some tea in which he loves too but nope.

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Hope everyone else is well
Granny,gali, sneeze x

DD is well sure it is just when something bad has happened once you go from thinking it will never happen to me to it will ALWAYS happen to me!! So not good for neurotic folk like us! Think we have got it in proportion now but will be glad when it is all over. Hope you are ok for measles and rubella. It's a worry. Has DS had his mmr? If so and the other children you meet are immunised it will reduce your risk. Don't see much rubella around these days.

Good to hear DS is taking an interest in drinking without the teat on. Try to ignore him if you make a fuss he is bound to stop doing it! DGS also loves tea without sugar.

He has the teat on. Like a proper babies bottle.
Hes drinking volvic fruit water in it right now.
Ds is up to date with immunisations so if I remember correctly that includes mmr.

I think I will feel better once ive had my first hospital appointment next week so I can tell them about this niggling pain.
Ive got kidney problems and it feels like ive got a hell of a lot more pressure on my kidneys thats resulting in pain.
Normal dipstick tests dont pick up any bug its got to be sent straight to lab.

1st community mw appointment that I had a few weeks ago was pathetic. The mw forgot to do bp even though I told her I was told to keep eye on it due to kidney problems which increases risk of pre eclampsia. She said right you can go now I said errm no, arent you supposed to do my bp. Her response ooh yes. She messed up and she had trainee with her.
Silly cow.

Rant over

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Sounds awful when you are having to tell the mw to do her job! I think sometimes they get a bit blasé and don't take into account individual mums! DD (and I now I am hard up :-). ) paid for a private scan to check for risk of pre eclampsia which showed notches in the artery signals so she was put on aspirin and the notches are gone now so risk is now lower we hope. No more children as the worry is ridiculous

So knackered and busy will write soon. IV gammaglobulin inusion tomorrow all day. Weds Nativity at school another day gone. Thursday GOSH one more day lost Friday meeting at hosp yet another day lost.Sorry not moaning but I feel sorry for my 3 Downs but bless them they just accept it. BIG GUILT

Hope all is well with you and all your little scallywags
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Hope you don't mind me asking here, what is BD? Ds1 suffers from chronic constipation and we are not having much luck with it even with lactulose and movicol, so any advice would be appreciated.

Dev BD is Blended Diet... essentially "real" food blended to a super fine puree and thinned then tube fed. MANY kids really thrive on it.

Dev whAT beemom said

Hope everything went well today

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Had another bleed yesterday. Much more than before. It was like I was in middle of a period then voila no blood at all.
Went to epu and got a scan
Mini me was happy. Nice strong heartbeat so dont know why that happened
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How is everyone x

Isitme. How scary for you. Main thing is its stopped, just try to take things easy though!

Facebook page on 'Blended Diet UK' Also is very supportive and lots of info. We think it has helped DGS turn the corner (hopefully) but we are still beginners

2old. Christmas is stress enough for any mum but when you add all your SN darlings you are in need of a ...I'm teetotal

We're all OK at the mo and chilling.

We have only just got him to eat lumps in his food, so probably not the best idea to reintroduce puréed food, even though I think it might help him. Thanks, I will definitely have a look at flaxseed oil as I hate giving him movicol and lactulose everyday.

Dev; The BD is blended food but given via peg/button and sometimes even via the ng tube.

If your lo has started having lumps and maybe the amount he eats isn't enough then you could possibly blend up whatever he leaves from each meal, so it is smooth, and give it to him thoughts tube?

Isitme: Huge hugs. What a worry that must have been but great that baby is happy :-D

Hello and hugs to all xx

Thanks
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How is everyone?

Granny hows it going x
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DD looks like she's caught a cold from her DH and DGS is coughing so we'll be back on the vomiting trail! He's been really well cold wise recently despite nursery. O well it's normal this time of year so just snuggle down with honey and lemon drinks . My nose a bit runny too so looks like a family affair. That's life but hope everyone else stays healthy.

DGS said his name twice yesterday. Not clear but shows he can do it

BD is working in the bowel department. No need for movicol for a couple of days....and we havent even brought out the big guns....ie pureed prunes and orange juice!

Sneeze : yay!!

Things here not great. DS' wee msn is sore (red, inflamed), sore throat, eyes been bothering him, button is hurting on inside but looks clean and well..... GP thinks maybe he has something affecting all his mucus membranes!!!! Seeing consultant next week! It's a mystery

Doesn't sound good at all. I know DS is a unique kiddie and just hope the consultant has a few ideas. I suppose as DS was right before they may be able to get him back on track and try to avoid this again. Bit of a nightmare just when everyone is looking forward to Christmas. Xx

Seems like everyone is busy with Christmas prep.

Where is everyone x

I was thinking that too? How are you and DS?

Things hectic here. Lots of appts, seeing consultanttomo about Luuk's various maladies. Mum awaiting biosynthesis results on Thursday with high probability she has breast cancer...... Good news though is we go to matching panel early Jan and our new addition should be with us fairly soon after. Xx

Just to let you know I am not dead just clapped out. Be patient more to come.

galli so sorry to hear of your mum's breast cancer. Please tell her i had it when I was 48+ (20 years ago) Hope all goes well with Luuk these kids are like a minefield. Good luck with matching panel. One trick I kept up my sleeve when they would say " well we have another couple interested" my answer would be "there is another authority interested" Mind you it was for adoption but it worked!!

Grandaughter how are you my lovely hope pregnancy is now going OK. How is my DGGS send him my love and xxxxes

Life is chaotic here (message for oldsneeze old fart is being brilliant)
Briefly took DD5 to GOSH last week 3rd gammaglobulin infusion given I did it. Friday I am doing it all at school under watchful eye
Changing DS4 anticonvulsants which is always fraught
Older DC's partying non stop TAXI SERVICE a la ma/pa
Me I have a neck scan on Thursday (nought serious)

PS still have all xmas pressies to wrap--any offers BLOODY COMPUTER will speak again soon.
Love to all xx

2old: Thanks for that. Nice to know you are fighting fit 20 years after:-Dafter. Re matching panel..... We are the only ones so hopefully shouldn't need to use your advice, but will def bear it in mind.

Hope your scan goes ok and well done for learning to do the ivs. Will make life less complicated hopefully. How old are your 5?!! How do you do it? Do you live on red bull?

Hugs to everyone and happy healthy holiday vibes.... Xxx

P.S: I haven't wrapped a single present yet either. All bought though

We are still here. DD, her DH and me have have horrible cold and feel like death warmed up. She had to struggle into work 2 days for 12 hour shifts as NHS sacking people who go off sick too much Good news is that DGS (in the eye of the storm) got nothing!!! Full of beans and us dragging our sorry carcases around unable to do anything with him - thank heavens for DVDs!

Hope your mum is OK galli. BC is very treatable nowadays, expecially if you are a bit older, but she must be worried sick, all not nice at all. Hope your new baby helps her through this...I am sure he will arrive and be a lovely christmas present for everyone.

2old. Hope the IVs are helping little DD. Do you have to continue doing them for a set period or intermittantly. Does she have a portacath (or whatever they use) now? Like galli, I dont know how you cope

isitme. Hope pg is going well and little DS is perking up again. Seems such a problem his digestion, even after it was all supposed to be helped by the PEG.

We are off to the comm paed and are going to say he's on BD so get stuffed with your scummy formula!!!